NHS Patient Data

Nadine Dorries Excerpts

Tuesday 25th March 2014 Westminster Hall

[Grahame M. Morris (Easington) (Lab)]

I congratulate my hon. Friend on securing this timely debate, which is raising some important issues that we need clarity on. We have just come from a seminar in which the Health Committee had some expert witnesses. Does she agree with the conclusions put forward there about the need for clarity before we go ahead with this data collection? I am thinking particularly about the cyber-security review, safeguards on anonymous or pseudo-anonymous data, separating out purposes for controls, a tighter definition of the care data—

[Nadine Dorries (in the Chair)]

Order. Mr Morris, this is a 30-minute debate, so can you keep your intervention short, please?

[Grahame M. Morris]

I will. I just want to mention governance arrangements as well.

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[Grahame M. Morris]

My hon. Friend is being very generous about interventions. Again, she makes an excellent point. We need an effective audit trail. If these data sets are being sold on, we need some effective control. That should be stopped. I hope that the Minister—

[Nadine Dorries (in the Chair)]

Order. Barbara Keeley.

[Barbara Keeley]

I, too, hope that the Minister will address that.

I want to give an example of data use approved by the Data Access Advisory Group of the Health and Social Care Information Centre, because I think that it is instructive. Minutes from the group’s July meeting show that the advisory group approved the use of hospital episode statistics data for HSpot Ltd and its FindMeHealth application. HSpot Ltd had requested HES data, including consultant codes, with the intention of publishing those data online to enable patients to compare procedures by hospital and clinician. Online information about FindMeHealth says that it is

“a new independent UK comparison site offering choice…to the growing number of people who are choosing to self-pay for private healthcare.

FindMeHealth compares prices across the top self-pay procedures and gives users access to the very latest data from NHS and private sources”.

What we have here is a kind of “Go Compare” website for private health care.

Much was said about uses of patient data in the debate on the Care Bill. The Minister said that information from the HSCIC

“may be disseminated for the purposes of ‘the provision of health care or adult social care’ or ‘the promotion of health’.”—[Official Report, 10 March 2014; Vol. 577, c. 136.]

Does the Minister think that the definition that he gave us extends to the HSCIC granting the release of patient data so that commercial companies can run comparison websites on the top self-pay procedures?

We need much greater transparency, and I thank hon. Members present for the questions that they have put on this matter. We need greater transparency from the Health and Social Care Information Centre, but we also need it about the other data sources and the other places where data are held. The chair of the information centre, Kingsley Manning, said in his speech last week that one of its key measures of success might have been that it was

“safely below the radar of public attention”,

but that organisation is no longer below the radar of public attention. Indeed, the organisation has become the story because of the errors that it has made, which mean that hon. Members and the public have discovered just how their confidential medical data are being used by insurers, by commercial companies and even on systems in the United States.

If people look at social media, as I did last night, they will see that there are many comments about just how much distrust people now feel towards the HSCIC. The organisation, as I said at the start, has claimed an “innocent lack of transparency”, but others accuse it of evasiveness and half-truths. As I have detailed, giving misleading answers to the Health Committee on established facts about who works for the organisation does not help.

All that has to change. Hon. Members, including me in this speech, have talked about ways in which the situation should and must change, and I hope that the Minister understands the vital need for that.

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[Grahame M. Morris]

The Minister is arguing that the scheme is an extension of what happened before, but there is clearly a quantum difference. There is general agreement that it is a wonderful thing to have data sets for research and public health purposes. The difficulty that the public have, about which we need to restore confidence, is when that information is being used for marketisation—for marketing purposes—by commercial reusers. I am not reassured by the Minister’s comments, but he has an opportunity to correct the problem in the House of Lords.

[Nadine Dorries (in the Chair)]

Order. Mr Morris, that is a very long intervention.

[Dr Poulter]

It is difficult to reply fully to such debates when we have very lengthy interventions, of which the hon. Gentleman is very fond. I would like to spell out to him what the quantum difference is. The Government have, through the 2012 Act, put in place safeguards for data protection that the previous Government never had. In particular, under the 2012 Act, data can be used only for the benefit of the health and social care system. We have put in place the safeguard that people can opt out from having their data collected and used. Those safeguards were not in place when the previous Government—